I just got back from volunteering at my sons' school for "pancake morning", and I feel tired, slightly weepy and a little blue and blurry around the edges. Why all this post traumatic pancake stress? Allergies. Anaphylactic egg allergies for both of my sons.
While the other moms chatted and flipped, without a care in the world, I was on full battle alert, mind racing, adrenaline pumping...let's just get everyone outta here alive. Making sure my sons' pancakes, carefully prepared beforehand at home, were hermetically sealed and safe from the great clouds of egg containing pancake mix. Washing my hands until raw, and trying to keep my clothes impeccably clean as I helped to prepare the eggy pancakes for the other kids, lest I should cross contaminate my own children's food. Strategizing about where my two should sit, and how to keep them safest without making them feel ostracized. Containing my panic and thinking on my feet when I noticed the other kids touching the syrup bottles to their pancakes /getting pancakes everywhere, and/or my son shrinking away from a giant plate of eggy pancakes that a student teacher accidentally sat by his plate.
When one of my sons was 5, we almost lost him. We unwittingly allowed him to consume a minute amount of egg that was an ingredient in something else. Within minutes he was vomiting, swelling, losing blood pressure and struggling to breath. I will never forget the sight of him lying, tiny and frail, in that hospital bed, face so mottled and distended that he was barely recognizable, as the nurses and doctors pressed around him fighting to save his life. It is burnt into my memory with the brutal clarity reserved for only the worst of moments, the most crushing of emotions. He cried out for help at one point. "Mommy, help me! Help me!", as a nurse jabbed him again and again trying to get the IV into his collapsing veins, and he couldn't breathe and he was terrified. And of course, we couldn't help. We couldn't do anything, my husband and I, other than hold his other hand, and try to reassure him with the stream of platitudes that were all our shock-empty brains could muster. The utter helplessness of that moment. You stand at that precipice of loss and are forever changed. All because of a little bit of egg.
So the stakes for us are a little higher than for your average family, for a birthday party, or a trip to the movie theatre or a pancake morning at school. They have other life threatening allergies too, my sons. It's not just eggs. For one of them it's peanuts and most legumes and tomatoes too. And it's not just them actually consuming their allergens that we have to worry about, it's the dreaded cross contamination (something that should be safe has somehow come into contact with an allergen) and contact reactions (simply touching the allergen, or touching something that someone else who was in contact with the allergen had touched previously may cause a reaction) that are the most difficult to avoid. We do our very best. We are vigilant about following all the allergy-safe rules. We have a great school, with good allergy policies. We take an active role in advocating for our sons and educating others, within the school community and beyond, and are so grateful for the teachers, parents etc. who are willing to help us reduce the risk, and take the extra time and trouble required for our sons to participate in some of the regular kid activities that would otherwise be too dangerous (i.e. birthday parties). But the simple fact remains that when my child walks out of the door at the beginning of his day, he has less chance of making it home again, healthy and alive, than yours does.
As Billy Pilgrim would say, "so it goes."
I often have parents shake their heads and say "I just don't know how you do it", "I would be a nervous wreck", "how do you even let them out of your sight?" etc. etc. I have no good answer for them. I could try to mumble something about childhood leukemia and severe cognitive impairments and just being grateful for what we have, but really what's the point? It could always be better, it could always be worse. We all walk the paths that we have to walk, one foot in front of the other, one step at a time, in good weather and in bad. And so it goes. There are certainly times of stress, as evidenced by this blog post and my burning desire to curl up in the fetal position with a tumbler-full of gin right now...but mostly, we just get on with it. We do our best to avoid an emergency, then take a deep breath and let them go.
None of us are really guaranteed that our children, spouses, siblings, friends will walk back through the door on any given day. Most of us feel quite remote and insulated from death and loss here in the long-lived, safety-belted comfort of North America...but the truth is that we are all really just a breath away from tragedy. Maybe knowing it is a gift. I stood at the precipice of loss and was forever changed. Maybe I hug them even more tightly when I do have them in my arms, and thrill to the sweetness of seeing them bounding towards the car at the end of the day even more deeply, than I otherwise could, if life felt safer.
When they came home for lunch, they were both happy and completely well. They thought their "pancake morning" was really great and that their special pancakes were even better than the ones the other kids had. No post traumatic pancake stress for them, just trust and enjoyment...which means that I did good. So at ease, soldier. And stay out of the gin.
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4 days ago
you are my hero. I don't know how you do it, but I know why you do it. In the book Dune, Muad’Dib says to himself "fear is the mind killer". I say that sometimes to calm myself when I'm freaking out. But I don't have to worry about eggs, nuts and veggies. You're doing great, mom.
ReplyDeleteThanks for the amazing post, and for a dose of relativity.
Oh E! Nothing that I could write here would be adequate. Except that yeah, you are a mother warrior, a wonder woman, and a hero mom. And I really think you could compile this into a book for moms of anaphylaxtic kids. (And I'm not just saying that-I genuinely believe you are sitting on a mountain of knowledge.)
ReplyDeleteThanks guys...definitely no "hero" though, just muddling through. :)
ReplyDelete"Fear is the mind killer". Definitely Mel! It's the fear that saps the enjoyment out of life...something I struggle with every day. For the big things, like E&L's health and lives, and a million other small things. I'm a big fan of "keep calm and carry on" for a mantra. lol Sometimes that's all you can do! I need to get one of those posters...
And Mr. H, I totally pictured you as a Southern gentleman with the "vapours" when you said that. Somebody, quick fetch the smellin' salts!
Found this link for us all:
ReplyDeleteEliminating Fear
I can't wait.
Wow! That's all I can say. I like your "letting go" and "moving on" mantras. In church today we were talking about hands and how they express us and letting go is always so hard. I lost a friend to a school knife fight and understand the "not coming home" part all too well. (this is Me, in case you were wondering)
ReplyDeleteMe, yay, hi! I like the hands expressing us lesson. I've been doing some contour drawing of hands lately (a la Gary Reef), and am absolutely intrigued by how much personality can be expressed with just a hand.
ReplyDeleteAnd you would have a particularly poignant sense of the fragility of life, not just because of losing a childhood friend (sorry, how awful that must have been!), but because of the risks your hubby has to take. Bet you hugged him even tighter when he came home! (for a couple days at least...;)